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Showing content with the highest reputation since 03/06/2020 in all areas

  1. 1 point
    Just curious how many of our PANDAS kids are affected by swimming in chlorinated pools. Last year when my son was at his worst (we didn’t yet know what was going on) we noticed a dramatic worsening of his tics as soon as he started swimming. We then didn’t try having him swim again until this weekend, 7 months after that last time (he has since been treated for his PANDAS with antibiotics). We were terrified his tics would start again, but this time, thankfully, there was no negative effect. With camp around the corner, I do worry about him swimming every day, though. I asked the camp to have him shower both before and after he swims, just in case. So I’m curious how many of us have PANDAS kids affected by chlorine. Please also include information about where your child is in their recovery. Thank you!
  2. 1 point
    Has anyone done CellTrend testing for auto-antibodies? This test was developed for POTS and ME/CFS, but surprisingly my son tested high positive for over half the 11 auto-antibodies in the panel. I'm treating this as very meaningful for likely AE. But would our insurance agree and pay for IVIG or PEX, based on a research test from Germany? Still it's enough for us to want to get serious about getting evidence to justify IVIG or PEX (both to us, DS20 himself, and insurance companies). However, years ago we'd spent $$$ for the Cunningham panel and insurance completely discounted that. So I'd like to know what other autoantibodies DS has, but I'd also like it to be meaningful to insurance companies. What have you found useful? Candidates I know are: Vibrant Wellness' Neural Zoomer Plus Moleculera labs' Cunningham Panel (much better for PANDAS than PANS) Cyrex Labs CellTrend' GmBH's CellTrend Mayo Clinic's ENS2 Labcorps Quest The only ones that are FDA-certified (?) and reimbursable in the US (as opposed to "research tests") are the last three -- the Mayo clinic's classical autoantibody panel (largely for cancer) and the very limited ones from Labcorps and Quest I care about getting info that's useful to us and to insurance companies. So if one of the first 4 was useful for anyone appealing for IVIG rejection, I'd love to hear that.
  3. 1 point
    Cmac

    Length on Antibiotics

    Pennmom—yes, his intrusive thoughts were the last thing to go. He had hallucinations (he saw werewolves all over the place), ocd—lots and lots of rituals like running in front of the back door a certain number of times before he could enter the house, extreme separation anxiety and extreme anxiety in general, and emotional lability. Those symptoms began to ease up gradually between 3-7 months from the time of the first onset in August 2018. The hallucinations and accompanying hand movements were the first clue that something was terribly wrong in August 2018. Looking back it seemed like there were some minor signs from earlier in the summer, too. I had never heard of PANS/PANDAS before all this. As for your original question I think we started to see some improvement after about 8 weeks on a certain combo of antibiotics (biaxin and augmentin) and then dr switched up antibiotics to get the myco p. Although no two kids’ path to recovery is the same it does seem like it takes awhile to get better. (I had such high hopes for our first 10 day course of amoxicillin that the pediatrician put him on when she discovered the strep). Hang in there—it’s going to get better.
  4. 1 point
    when i was reading your post, i thought it was written by me!!! My child flipped on magnesium but flips on EVERYTHING we have tried. It turns out that she went crazy on everything because she had severe yeast/fungal issues. She is now on Amphoceterin and doing well and also tolerating more supplements/vitamins. It was a hellish 13 years and now we are finally seeing some results. Also possitve for lyme/bartonella. We treated her with the bactrim and mino. and she was a mess. Again, I think because yeast was out of control. Hope this helps.


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